Dressler Syndrome/Post pericardiotomy Syndrome

[Wildmeadow]

Any one on board with knowledge/ experience of this condition?

Xx

[Sunnie2day]

Have you seen this about Dresslers?

mayoclinic.org/diseases-con...

[Wildmeadow in reply to Sunnie2day]

Yes! Thank you. Very debilitated from 4th episode of this inflammatory condition- including two pleural effusions. Keen to hear from anyone who has experienced it. Xx

[Sunnie2day in reply to Wildmeadow]

So far I've managed to avoid it despite having recurrent pericarditis for over 20 years. I have had several effusions which required pericardiocentesis a few times, not pleasant experiences. As a consequence I have 'stubborn' minimal effusion that refuses to drain off but is so minimal they don't want to 'go in after it', some scarring and thickening but so far have been told it's not constrictive. I went nearly 15 years without an acute flare by very carefully managing lifestyle (low sodium-salt intake and avoiding trigger situations like hot tubs and holidays to warm humid destinations, more).

Have your doctors diagnosed you as having constrictive pericarditis, are they talking a pericardiectomy now?

[13allit]

Hi

I developed this after my mitral valve repair two years ago. It took nearly two weeks to diagnose and I was initially given colchicine for 12 weeks. I was told it would wear itself out and to expect recurring episodes for around a year but it could go on longer. My symptoms was pain across the top of my back and chest and feeling short of breath. I was also very tired. I soon learnt the only way to recover quickly was to rest completely when an episode occurred and slowly pick up again when it had gone. I was also told that trying to keep going would put pressure on my heart so to listen to what my body was able to do and not push myself during a flare up. I was given naproxen to help with the pain with later episodes. I’ve been unlucky in that mine has lasted more than the year but it does get less severe each time and they are almost non existent now. Please get in touch if you think I can help.

[Wildmeadow in reply to 13allit]

Thanks for reply, my recurring symptoms are like yours, chest pain, arm,neck front shoulder, exhaustion, 4 episodes since MI in July after surgery. Two with effusion. Am on colchicine, started high dose of ibuprofen but have started to have arrhythmia reaction to that.

Seeing surgeon again next week. Very debilitated.

[13allit in reply to Wildmeadow]

I couldn’t believe how much it knocked me out and put back my recovery. In some ways the biggest problem was accepting I had to go with the flow when I had symptoms and make the most of the time between when I felt better. It’s definitely one thing you can’t work through as I found to my cost. I also found that being propped up in bed helped as I didn’t feel too much pain that way. I’m actually seeing a rheumatologist next week as I get other inflammation/immune reactions to things as my Dressler symptoms are tagging onto periods when I have joint pain but I have no inflammation markers indicating it’s there! It seems to be something that very few people actually know much about. The rheumatologist frequently use Naproxen to control inflammation but if anyone has heart problems you can’t take it for long periods. As my valve wasn’t linked to any heart disease I’m fine. Maybe that could be better for you. There was one cardiologist at the hospital I was at who was a expert in things like this and he finally diagnosed it as I had no evidence of extra fluid but had other classic symptoms. I’ve also found my GP to be very helpful and he ran loads of blood tests and my vitamin D was low. I was given three months of high dose and that has really helped, it may be worth seeing if anything else is out of kilter as it’s surprising what slips when your heart isn’t working right. Hope you get some relief and don’t forget to take as much time as you need to recover from each episode as it gives your body the best chance to get this out of your system.

[Wildmeadow in reply to 13allit]

I am so relieved to hear this is not something in my imagination- one Cardiologist told me “stop worrying and get on with your life..” I wanted to punch him! This is not my imagination. It is very scary.

Have you had any arrhythmia problems- mine coincide with increased ibuprofen 1800mg per day! And coming off of diuretic- Bumetanide.

How often do you have an episode now?

[13allit in reply to Wildmeadow]

It definitely isn’t in your imagination but as so few of us get it it’s not always understood. Unlike pericarditis it does diminish and I’m at the point where any episode is very manageable. The ibuprofen weren’t much use for me which is why I got given the naproxen. I only need a few days worth now and it clears up. Before it took about a week taking them and it does go quicker if I admit it’s there and start taking them early. It’s difficult to say how frequently I get it now because it seems to be linked to when there’s a lot of viruses around. I rarely get the viruses but my immune system seems to jump into life and then I get a flare up. Since Covid it’s been worse in that I’ve had it more but the symptoms are barely noticeable now but I’ve got super sensitive to them! I’ve also found that keeping my shoulders warm by draping a scarf over them does help when it flares up. My heart rate never changes with it. Not sure what your op was or if you have any heart condition now but I’m classed as not having one. My GP has been the best person to help me manage this and we’ve learnt together as we’ve gone along. You may find your surgeon doesn’t know much as they’re more knowledgeable about the mechanics of the heart but definitely worth speaking to them. Just make sure you keep resting when you get a flare up and don’t feel guilty doing so. An extra day may stop another flare up. Good luck.

[Wildmeadow in reply to 13allit]

Thanks so much for this helpful reply. Seeing surgeon Thursday. Trying not to fall between surgery and cardiologists..

I had an aortic valve replacement- complications with surgery that resulted in heart attack. Have had 2 pleural effusions with flare up of this and two without effusion, current flare up lasting 10 days now and palpitations really bad past few days. You are giving me hope that it will become manageable.

Thk you

Cx

[13allit in reply to Wildmeadow]

Hopefully your surgeon will be happy with your valve replacement and discharge you tomorrow. That’ll leave you with fewer people to work with. My heart nurse was very good and told me that I needed to forget the usual recovery timescales and work on what my body could cope with. There are lots of people on here who seem to get back to being able to do everything within a few months. I also had pneumonia after my op so was told that each thing on it’s own was serious and putting them all together was putting a tremendous strain on my body and importantly my heart. My op was in May and I was told not to expect to be ‘better’ until Christmas. She was right. That advice too, the pressure off me to push myself too hard and gave me permission to repeat when I had bad times. You’re in a similar position with everything you’ve been through. Each thing on its own is serious so put them all together and it’s no wonder you’re getting all these symptoms. I found it useful to look back at previous episodes and see how the present one was different and over time I could see an improvement. At first it wasn’t much but then I realised what I’d been able to do in between. Walk when you can and up your exercise when you have a good day. You may find the next day you feel bad but it will get better. Remember that Dresslers isn’t only manageable but it goes away. You’re still only very early days after your op anyway. Take baby steps and you’ll get there. I’m now doing yoga, swimming and a gym session each week with no problem. I managed to go back to yoga after 4 months and it was the best thing I did as it really helped my breathing and posture and the relaxation at the end calmed me down so much. Let me know how you get on tomorrow and good luck.

[Wildmeadow in reply to 13allit]

Thank you. Think I need to really lower expectations and accept the limitations on me after what has hAppened. X